Meningitis in your words

Leanne Smith's story

Location: UK
Outcome: Full recovery
After effects: None

Social media influencer and mum of two, Leanne Smith, also known as BusyLittleLea, immediately recognised the signs when her daughter contracted meningitis at 10 months old, as her son had also been treated for meningitis five years before when he was just 13 months old. Whilst still undergoing observations, both children are doing well.

Meningitis. The word that sends shivers through to my core and probably every other parent too. The truth is, in the past 5 years it's something we have experienced with both of our children.

Our son was 13 months old and a fit and healthy baby. He started to become unwell and developed a horrific rash along with facial swelling. Naturally I was extremely concerned at his presentation, I took him to our local urgent care department and then to A&E, but on both occasions, we were sent home. I had pleaded with the doctors, I told them he wasn't well, he was my baby, and I KNEW him. They ran observations and checked his sats, they reassured me he was fine, and it was 'just a rash'.

Watching his symptoms worsen, I refused to let it go and the following day I took him to see our GP. Luckily, we have a fantastic GP and upon seeing his presentation he too was very concerned, so he referred us to the paediatric assessment unit at the hospital. We went straight up, we were there a few hours and in this time our son was checked out by the registrar, they told us that ordinarily they would admit him, but unfortunately, they had no beds! They wanted to send us home to return the following day for monitoring. Of course, after days of sheer worry I refused to go home, I told them that our son was clearly poorly and that we weren’t going anywhere! Time seemed to be passing by so quickly and in the worry, things were becoming a blur and felt surreal. The registrar checked him over again, by now his rash had stopped blanching, his face AND his limbs were now swollen, he was becoming limp, and he had started to vomit .... at this point they started to act and quickly.

I remember being so unbelievably frightened, I can’t explain or describe the depth of fear, but even now, writing about it brings it all back. We were transferred by ambulance to a different hospital 20 miles away, where we were placed in isolation and told he was being treated for meningitis. He was given both antibiotics and steroids. It was explained that this was as a precaution due to his presentation, his symptoms, his rapid deterioration when at the first hospital, and because they did not have time to wait for the swabs and blood cultures they had taken to come back. We remained in isolation for several days whilst our son was treated.

Luckily, he responded very well to the antibiotics and steroids, he started to pick up and so we were advised by doctors that he could be discharged home. When the results of his blood cultures came back, we were told there was no trace of 'bacterial' meningitis (the very dangerous form) though they never actually did perform a lumbar puncture, which would have confirmed this, and strangely enough he had responded to the antibiotics given to treat bacterial meningitis. He was, however, diagnosed with viral meningitis, which we were told can sometimes present in a very similar way and, left to manifest can become dangerous too.

I was a new mum and what happened with our son affected me so much emotionally. I am extremely glad though that I had the confidence to stand my ground, and to make sure that eventually, Doctors listened to me. He's just turned 6 years old and is a wonderfully happy, healthy little boy, but the memories of this time and what we went through flash back to me like they were yesterday.

Our daughters case is much more recent and raw. She was 10 months old. She had started with a temperature late that morning and despite my efforts throughout the day, I hadn't been able to bring this down below a fever. She also had a very slight rash on her torso, that was light in colour and looked very much like a viral rash, and when I checked, it was blanching.

That particular day, she had also been squeezing her eyes shut on occasions, especially when going from inside to outside, but it was a bright sunny winters day, and I honestly didn't think anything of it.

Despite her high temp and light rash, she appeared otherwise fine, of course not her usual self but she was still playing, eating, and drinking as normal. My husband said she could be teething, I agreed she probably was, but not being able to bring her temp down didn't sit comfortably, and (possibly due to what we had been through with my son) I just had a niggling feeling something wasn’t right, so at around 7.15pm I called the NHS 111 service to try and get advice. There was an automated response advising me of a 30 min wait to speak to an operator. I've rang 111 before when she had a high temp and was offside, and after getting through the first set of usual questions, I had to wait 6 hours for a practitioner to ring me back. I knew I could be at our urgent care department in 20 minutes, so I decided to take her to be checked, just to be on the safe side, as with babies, you can never be too sure.

Upon arrival her temp was taken, it had reached 40c. She was given her then due dose of paracetamol by the triage nurse, and we were placed in a side room to wait for a doctor. We were eventually called through and I explained my concerns. He briefly examined her and told me there was nothing to worry about, I asked about the rash (which he hadn't checked) and explained about her squeezing her eyes shut, and he then advised that they couldn't possibly connect everything all of the time. I felt uneasy, and I don’t think I’ll ever forget the frustration and upset that rushed over me when he turned to me and asked me with a slight smile "are you a first time mum?" I was left feeling like a neurotic mother when I had genuine concerns about my baby and had come to urgent care for help and advice. Personally, I believe that’s not a question that ever needs to be posed to any parent in such a situation.

The doctor told me he was happy for me to have her temperature taken again by the nurse in 15 mins, and if it had started to come down, then we could go home and administer Nurofen later in the evening.

I went back into the side room with my daughter, and the nurse took her temp, 38.8c, it had started to come down, but I still wasn't comfortable with going home when she still had a fever. She quickly started to become more irritable, she was crying (a different cry to her norm) and was restless and I noticed a purple and red pin head rash had started to form on her body in small clusters and it seemed to be spreading quite quickly.

By chance, the doctor who had earlier seen us, then walked past the side room we were in. He heard my daughter crying and came in to ask if her temp had come down. I told him it was now 38.8c and he again advised that we could go home. I explained I was not comfortable with this advice, nor that he hadn't checked her rash, which was now changing. He then came over to check her rash and upon doing so, he told me he was going to make a call to the paediatric assessment unit at the hospital. He returned quite quickly, advising that the hospital wanted me to take her over to be seen.

I drove straight there phoning my husband on the way. On arrival I went up to the assessment unit where she was seen by the nurses and doctors right away. She underwent lots of checks and had lots of bloods taken. It was all very quick and again, felt like a blur, but then the doctor came to speak to me and explained that they were going to put a cannula in, so they could administer IV antibiotics to treat her for suspected meningitis.

I froze at the very utterance of the word. Surely, we couldn't be going through this again with another child?! The doctor explained that this was (again) a precaution, given her current symptoms of a high fever, a change in her cry, being restless and irritable, squinting her eyes and having a now non blanching rash, typical of a meningitis rash. They were extremely quick at getting the cannula in and administering her first dose of antibiotics. I could see she was becoming more poorly and that she was exhausted. Once again that familiar fear was racing through me. My husband was at home with our then 4 year old son, and I knew I had to remain strong for our daughter.

The doctor advised that he also wanted her to undergo a lumbar puncture to test her cerebrospinal fluid. At this point I broke down, she had already had a lumbar puncture at just 2 days old, due to having sepsis when she was born, and now, she was having to go through this procedure again only 10 months later.

We were moved over to the high dependency unit and placed in an isolation bay. They had made a parent bed up ready for me at the side of her, but I didn't sleep at all that night. She was placed on 2 hourly observations and as well as her IV antibiotics she also received IV fluids as due to her fever, she was dehydrated.

A parent’s intuition can speak volumes...As a parent, and I think particularly as a mum, you know your baby better than anyone, so if you're not happy with a decision then please, don't be afraid to challenge it. It might turn out to be the best choice you ever made.

My husband joined us in the morning, and the following afternoon, we were called down for her lumbar puncture. I carried her down and I asked to be present for the procedure. I had been present when she had her first LP and I wanted to be there for her again. I stood in the corner of the room watching the procedure in tears, but knowing it had to be done. I prayed they would draw clear fluid and after 3 attempts they did. She was placed back in my arms, and she instantly fell asleep, exhausted from crying and fighting.

The samples of her cerebrospinal fluid were sent off to the lab, and the results took 48 hours to come back. It was then that we received the news we had been dreading, the cultures confirmed she was positive for Pneumococcal Meningitis, a life-threatening infectious bacterial disease that causes inflammation of the layers that surround the brain and spinal cord, and which requires urgent treatment. According to statistics, most cases of Pneumococcal Meningitis occur in babies and young children under 18 months of age.

Leanne Smith and child

We were beside ourselves with worry, but our saving grace was, she was already receiving the correct treatment, thanks to the wonderful doctor who made rapid decisions on her admission! After 3 days we were moved off the high dependency unit and into our own room on the ward, where she continued to be treated via IV infusions for another 7 days. We spent a total of 10 days in the hospital before we were finally allowed home.

As bacterial meningitis can often leave survivors with severe after effects, she now has to have developmental follow up's and hearing screenings as an outpatient to check for any lasting damage, but we are praying it was acted upon quickly enough and that this isn't the case.

We are now 18 months on, she's since celebrated her first birthday and her second birthday, and she is doing marvellous. Her initial hearing screening went well, though she does require further screenings due to being so young. Her first developmental check went swimmingly, and she is meeting all her milestones and then some!

If I'm honest, I am still very much shell shocked. I try hard not to think of how different things could have been if not for quick reactions, and if I had taken the initial advice of the urgent care doctor and gone home ... but I imagine that this might be a very different story. She was a very poorly little girl indeed and we are very aware just how lucky we have been.

For me, these accounts were hard to write. I appreciate they are emotive, and to be honest it's very difficult for me to re visit the memories of what we went through with both of our children, and it’s hard to believe that we could go through this even the once, let alone twice. But, having been through such ordeals, I really do want to raise as much awareness as possible and to hopefully help other parents.

I have since received so many messages asking me about the signs and symptoms of meningitis and how I knew what to do. The truth is, and in particular with my daughter, I never actually suspected it was meningitis. I did however know something wasn’t right and I guess having been through such trauma before, I followed my instinct, but I had no idea how rapidly the situation would change or that it would turn out to be something so serious.

I understand that some of the listed symptoms of meningitis can be linked to other illnesses, some of which will be nothing to worry about, but I'm sure as a parent you will know when something isn't right. So please, listen to your instincts and trust your intuition, and if you feel you need to get your little one checked, please do it.

It's important to remember also, that a baby or a child does not have to present with all listed symptoms to be suffering meningitis. It can be as little as one or a combination of, and it is extremely important that you do NOT wait for a rash. Meningitis can see a child become a lot worse very quickly, so if you have any concerns whatsoever, please get checked out and fast. It’s a disease that does not discriminate, and it has reared its ugly head with us twice. I feel it’s also important to add that both my children's vaccinations were up to date.

The scary thing about our experience also, is that even though our daughter was diagnosed with ‘bacterial’ meningitis and our son with ‘viral’ meningitis, initially our son presented so much more unwell than our daughter had, and his physical appearance was virtually unrecognisable due to the rash and swelling.

Leanne Smith's family

We have the utmost respect for our NHS and our doctors and nurses, and I must say, we received fantastic care both physically and emotionally whilst we were in the hospital on both occasions and for this, we will be eternally grateful. Sadly though, it wasn’t all a positive experience and I really feel I should have been listened to much more when I first took them both to be seen, as my children’s mother I know them inside out and I just knew something wasn’t right, and goodness knows the outcome if I hadn’t challenged their advice.

A parent’s intuition can speak volumes, and I believe it’s something that really needs to be considered much more by professionals. They might be doctors and specialists in their field, but that doesn't mean they are always correct. As a parent, and I think particularly as a mum, you know your baby better than anyone, so if you're not happy with a decision then please, don't be afraid to challenge it. It might turn out to be the best choice you ever made.